Robert Evans (26:53)
And that's, I think that's like the, again, increasingly the way it's seen today and probably the right way to look at it is that like, yeah, some people, it's a different way of Being a person, you're not, like, it's not the same way everyone is, but like, it's not like an inherently like bad or deleterious thing. It's just you're different. And so there are different ways that you're going to interact with and, and view the world and different things that are going to work when like we're talking about educating people with autism. And, and again, our, our understanding of this is still very much developing, but it's in a very primitive state in the 80s and 90s. Right, right. Right now people do know Asperger's syndrome is a topic of discussion by this time in like the 80s and such. And so there is an understanding that like some of these kids are like, you know, it's this idea that like some of them get superpowers. Right. Which is not really an accurate way to view it. But like some, we do know that like there are people with autism who are like super high, like highly intelligent and capable in specific areas. But the general understanding if you get this, is that your kid is never going to live a quote, unquote, normal life life. Right. That's how people talk about it. So if you're keeping track in the late 80s and early 90s, you get a couple of things coming together. You have a generation of parents who are still used to and traumatized by the thought of being blamed for their kid's condition, who are also used to seeing autism depicted as a fate worse than death. Feeding into this complex churn is the fact that as the term autism grows to encompass more people, it loses what author and doctor Michael Fitzpatrick describes as a sense of coherence rinse. Michael wrote a great book about the biomedical movement titled Defeating a Damaging Delusion. And in it he writes, the autistic spectrum stretched from children who are non verbal to severely disabled to those who are of high intelligence but behave strangely and had no friends. The spectrum included children with Rett syndrome, a neurodegenerative disorder with an identified genetic cause with fairly superficial similarities to autism. It also included children with atypical autism or in the usa, pervasive developmental disorder not otherwise specified, a label that merely exposed the incoherence of the diagnostic framework. As one authority commented, any classification system that includes atypical versions of one entity as a separate diagnosable entity all its own has to be next to useless as the basis for scientific progress. Which is a really good point that like, yeah, there's this thing and also the opposite is also the thing. Like, it's like, yeah, that's. Maybe we didn't have it right. Maybe that's not a super useful term to be describing this as. You know, stuff like this is a moving target. And it's both worth acknowledging the harm that the fact that this is deeply incomplete and fucked up has on a lot of kids and parents at this time. And also, well, you were never gonna get this right straight away. So the confusion here is the final ingredient to what comes next. The unorthodox biomedical movement, which is how Fitzpatrick describes this movement that kind of terminates in that five year old in the tube, starts with parents who are angry and shocked that their kids are, as they see it, broken, and they're also angry and scared of the thought of being blamed themselves. The clinical definition is flawed and this produces the opportunity for them to question it, starting with a rejection of the idea that autism is, quote, purely genetic. Now, if you remember, guys like Bettelheim had argued for years that autism was caused by refrigerator moms, while science had increasingly come to the conclusion that the roots of autism were largely genetic. Now, no one ever argued that was the whole story. And in fact, an interesting thing about autism is that identical twins, in cases of identical twins, both only have autism about 90% of the time, which means there's some degree of. And when we say environment, that means something other than genetics, that's playing a role. Right. Fitzpatrick succinctly summarizes what happened next. The biomedical activists emphasize environmental rather than the constitutional factors in the causation of autism, which they insist is a biomedical metabolic or immune system disorder. While some activists seek to redefine autism as a form of mercury poisoning or as the result of some process of vaccine injury, others regard it as primarily a gastroenterological disorder. They reject the focus of the autism mainstream on genetic research, demanding the redeployment of funds into the study of putative environmental factors. And some of this is like a, a pride thing where they're like, if it's genetic, that means it's my fault. Again, which is like not, not how you should look at that. But people do too often and yeah, so we're going to be focusing on like the bastards and the quack experts kind of at the core of this movement. But we're also going to talk about a lot of these activists. I don't want to act like that's the only division happening here, though, from the flawed state of affairs in the early 1990s. You also have, like, that's not the only thing happening within kind of the community of People with autism. In the early 1990s, you start to have the first neurodiversity activists. And these are people like Jim Sinclair, who was a man with autism, who wrote in 1993 this kind of very beautiful piece in which he talked about, like, I understand why parents might mourn not having the child they had expected to have. But then he went on to write, quote, we need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must for your own lost dreams, but don't mourn for us. We are alive, we are real, and we're here waiting for you and I. Yeah, we're not going to talk about that side of the story enough because this is a podcast about bad people. But I thought it would be an error not to include that.
